Monthly Archives: October 2012

Journal Entry #7: A Finger for the Effen MOND

Yesterday, I mentioned that if the energy I have for Reece isn’t used in a positive manner, it could become destructive.  Yes, this energy has to go somewhere–right now it goes somewhat towards the blog and somewhat to other areas.  Depending on what feelings come forth from it, there can be deep desires to be consumed by it.  I don’t want to be consumed by it, which is why I am trying to find a healthy way to channel the energy, to do something positive with it, versus drowning in deep emotions.  Deep emotions are important, but I fear that the waters I tread when I am in them may become choppy and take me down.  It wouldn’t even take a big wave to do it–just enough of a wave to wash over my head and take me under.  And under can look like many different things–but I know that whatever “under” may be it has been strategized about and carefully thought out by the devil himself.  Or, as Reece used to say, “The Mean Old Nasty Devil” (the MOND).

I have repeatedly stated that God has covered Reece and us, but for the rest of the post, I’ll speak for myself versus Reece or Terry or any of my family.  The Lord has been so good to me in showing me ways he has been supporting us.  And truly, I don’t think he is necessarily nearer to me now than he has been at any other time of life.  However, much of life’s “noise” has been muted during this last year, which has helped me understand God and his presence in a very different way.  Our circumstances have caused us to rely on God.  It isn’t about having a strong faith at all and it isn’t about being a “better” Christian.  I tried everything I could to figure out a way to fix this–maybe if I pray in a certain way or ask in some special fashion, Reece will get better.  I had to yell “uncle” many times to realize there was no path but God.  In fact, for me, it is as I mentioned yesterday; it’s about being at a completely weak and broken place.  It is the first time in my life I can honestly and purely relate to the apostle Paul when he says:

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.   That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”  2 Corinthians 12:9-11

There has been no option to muscle my way through this.  There is no amount of caffeine, alcohol, retail therapy, self-help books, or motivational speakers to get us to persevere.  It is impossible to do without God and self-reliance quite possibly may be the path to personal destruction.  It isn’t that I’m intrinsically a weakling–I’ll be the first to admit I am a relatively strong and most certainly stubborn person.  I like to win.  I like to say I did it all by myself.  In fact, I am built this way so well, I’m amazed that God was gracious in allowing me to mess up on my own for the first 32 years of life.  I look back to life’s roadmap that has been full of me stubbornly choosing my own course and messing up.  My successes are only built on the foundation of the Lord and, truthfully, done in a way that he allowed me to feel like any success I found was of my own volition, when in fact, he was gently (and thankfully) pointing me in the right direction.  I feel like it was his way of letting me try my best on my own before he stepped in.  He is so parentally compassionate in that way.  And I’m sure he knows that there will be many more times in this life I will fail to seek Him first.  He knows me so well.  No, I’m not weakling, but no matter how strong I am, I am no match for the things of this world or for what we’ve walked or for where we are going.

As much as I feel like the Lord has been covering us, every day I have to make choices to not let Satan “win”.  This may sound crazy, but I don’t care.  This is the reality for all of us, but again, I’m talking about me here.  There are certain points in life where I have been more vulnerable than others.  These are low points in my life–when my guard is down, when I’m tired, when I’m seeking comfort.  It probably goes without saying, but this is one of those times.  Satan is ready to pounce.  And again, I’m sure he’s been lurking every day of my life, but I’ve never been as in tune to it as I am right now.  For every thing that doesn’t beat us down, he has a tactic try to do so.  For every time I thank God for something, he’s ready to take me down with some crappy thought or doubt or attempt to create fear in an effort to abandon God’s promises.  It’s not even necessarily obvious things that he seeks to use; it could be mundane things, half-truths, or low feelings.  He’ll use anything he can find to try to drag me down.  He tries to grab a tiny corner of the page of the day in order to flip the whole thing over with his words/feelings/doubts/fears being the place where the day leaves off.  Then, he tries to do it again the next day.  I notice it every day.  I usually refer to these tactics as “traps”–usually mental traps.  Case in point, I will think of a painful memory of Reece–usually one around when Reece was in our home and the grueling routine he–we all–endured.  It becomes easy to pick apart the memories and beat myself up over the things I “should have” done.  I should have spent more time with him, versus allowing others to help.  I should have taken more night shifts with him after the baby was born.  I should have done this and I should have done that.  If I’m not careful, I am mentally immobilized to do much else with the day–that is if I allow Satan to do his damage and keep the edge on the day.  All that energy that I have in my life that has always been and always will be devoted to Reece, that is vulnerable too.  It must be channeled into something good; otherwise, it could easily be put toward focusing on all the things that “could have” happened.  It could be used to focus on how I feel we were wronged or to keep my head in the hospital and the trauma versus in the hope of the future.  It could be channeled into all sorts of bad habits and vices.  But that’s not from God.  It is only through seeking God’s truth, reading the Word, reading God’s promises, and allowing my understanding of God’s provisions for Reece to wash over the memories of what we experienced that I have the ability to ward off the damage that Satan seeks to bring to my life.  And it could be so damaging.  So it turns out, the armor of God is the real deal.  We actually do need it…at least I do.

Right now, I’m just making it a point to recognize when it’s happening and call it out for what it is.  I’m spending a lot of time trying to discern truth from lies.  And as our bible study leader said last week, “A half truth is a whole lie.”  Amen.  But you can be sure that whatever comes out of this in my life, it will be my way of giving the effen MOND the finger.  Classy, right?  I figure it’s his terminology, so I can use it on him, just so I make myself perfectly clear to him.  I hate that guy.

Whatever I end up doing, one thing is for sure; it will not be without praising and thanking God and without professing his deep love for me.  And it won’t be without professing his deep love for Reece.  I no longer care what others think of my feelings about God.  Without God, there would be no more “what next”?  There would be no more looking forward.  It would always be looking back and longing for things of the past.  There would be no more hope and excitement over seeing Reece in the future.  Even more so, there would be no more certainty of it.  Hope implies the possibility of something.  I can hope around the timeframe of seeing Reece.  I hope that I see Reece soon.  However, it gets even better than hope with God, because I know that someday I will.  And every single day that is something that I need to know.



Filed under Journal Entries

Neil, Faith, and Purpose

We’ve been doing a bit of traveling the last couple of weeks.  It has had its own therapeutic purposes and it has kept us quite busy.  Last week, we were able to go to see Neil Young in concert in Chicago.  It was good for us to see him.  Reece actually claimed that “Heart of Gold” was his favorite song, followed closely by “Ohio”.  We often listened to those songs on the drive to preschool and Reece requested hearing those songs when we were driving to and from the hospital for home visits.  In fact the first thing he asked when we got in the truck before taking him home that first trip back was, “Can we listen to ‘Ohio’?”  While Neil didn’t play either song during the Chicago concert, it was a great show and I think an important thing for Terry and me to do.

This past weekend, we went to Faith’s Lodge, which is a large lodge in northwestern Wisconsin that hosts bereaved families who have lost children.  It is a place to spend time with each other in a serene setting, with other people who understand the loss of a child, and just be.  The weekend was an important one for us.  I do believe we will go back next year, although we will likely go to a parents’ only weekend.  The ages of our girls demand much hands-on time and thus make it difficult to connect for long periods with others. However, I am glad that the girls went with us this time.  I don’t care much for leaving them right now and it was really neat to see all the kids of various ages playing together.  It occurred to me as the days passed that the kids that came to the lodge somehow corresponded in ages to the siblings lost by the other children.  So kids and families played with each others’ kids in a therapeutic way…or at least that is how it felt to me.  There weren’t any five-year-olds there, but there were many boys there older than Britta.  It was bittersweet to see them running laps around the room, pushing oversized dump trucks and Cars vehicles, much like Reece used to do.  Britta naturally gravitated to them.  I noticed other families doing the same with both of our girls, although it may not have been a conscious thing.  It was different from a regular playdate with other families.  While I would never wish the loss of a child on anyone, it was important to have that time with other people who “got it” and who probably felt those bittersweet twinges in a real way right along with us.  No one there discussed it with me, but then again, no one had to.  If you’ve been through it, you understand–there’s no reason to discuss it.  And that type of understanding is priceless.

There is this really beautiful area on the property where people paint stones with their child’s name on them and lay them near a bridge.  We painted a stone for Reece.  I think if he is aware of the stone (which I believe he is), he probably really likes it.

There is typically some period of time, before you add a child to your family, for preparation, planning, and adjustment–be it via pregnancy or the adoption process.  It makes sense to me that after the loss of a child, the time immediately following would be an intense adjustment period as well; perhaps it never ends.  As I discussed with one of the other mothers this weekend, right now it feels perfectly alright to be broken.  I feel like we were operating in such a heightened survival mode for so long that now, the feelings of the trauma and exhaustion are catching up.  No one can fix it or make it better and I don’t want anyone to try to do so.  I guess this part of life demands brokenness and that brokenness has its own purpose.  We need to assess the damage before we can try to put anything back together.  Sometimes things can’t be made right and sometimes the holes that are created can’t be filled.  I’m not interested in filling the hole and I’m not interested in even attempting to go back to the way things were.  I’m not the person I was a year ago and I’m never going back.

I have been on a quest of sorts these last few months to figure out how our situation with Reece will be used in our lives.  I love hearing from people about how Reece’s life touched their own; I know our Reecie had a big impact on this world and will continue to do so.  He fulfilled his purpose here and I know we will hear about some of it, but that most of it we likely will not.  I don’t believe that we were given this unique path as Reece’s parents to have it go unused in our own lives, though.  Part of my desire to figure out what is in store next is that one doesn’t lose parental energy for a child that has passed away.  I haven’t lost the energy that I have specifically for Reece and I can’t just redirect it to my other kids.   It has to go somewhere and I want that “somewhere” to be a productive and positive thing.  It is slightly ridiculous that I am rushing to figure this out–it’s probably a knee-jerk grief reaction to scramble; if I have learned anything it’s that God has perfect timing for everything, including this part of the plan.  Still, I think I have a fair amount of paranoia that if I don’t figure out something productive to do with the energy, it could become destructive.  But I’ll save those thoughts for another post.

Another part of my desire to know what is next in store is that I want to figure out my life’s purpose in some sort of attempt to figure things out earlier on in life, versus wasting time on the non-essential.  Somehow in my mind I hope that perhaps the Lord will mercifully spare me from a prolonged life here by doing so; maximize my time in some sort of way.  This last statement, I can already tell as I re-read it, could be largely misunderstood.  I’m not suicidal or ungrateful for my life.  I love my life here–love my husband, my kids, my family, and who I believe God made me to be.  But I believe to my core that this is not our final place–that God has a purpose for each of us on earth and that once it is fulfilled, our time here is done.  This strong belief I have, coupled with my grief state over Reece, leaves me feeling urgent to figure out the rest of the plan (an impossible task, really) so that my time here won’t be living until a ripe old age.  At the same time, I know a big purpose of mine is to raise my girls in a God-honoring way and to help them understand how Jesus loves them.  And I thoroughly enjoy all of my family, so it feels conflicting to want to leave them here.  Until I’ve done the part God has tasked me to do on the child-raising front, I will be here regardless.  Still, I believe there is likely another part of my life’s purpose that I have yet to uncover.  So I feel urgency to help life along as best I can, if that makes any sort of sense.  I don’t want to take a lackadaisical attitude that prevents me from seeing Jesus and Reece for one more day than necessary.  That may seem bizarre, but if you walked in my shoes for five minutes, you would understand the constant pull Heaven-ward on a daily–no, hourly, and at times minute-by-minute–basis.  I suspect when my girls (God-willing) graduate high school and move out, it will feel like a watered down version of this.  Heavily watered down, that is.

On an encouraging note, I feel like I may have received some clarity over the last couple of weeks regarding what I am supposed to be doing going forward.  I am still praying about it, because it is admittedly not a path that I would naturally be choosing.  And since my life, especially this last year, has been full of God’s plans for me being completely inconsistent with my own desired outcomes and plans, this seems to be a sign that it may in fact be the right thing.  This area of what I believe I am perhaps being called to do seems to make a lot of sense to me in light of all that has happened and our desire to make some sense out of it.  The most I can say right now is that I do feel it involves writing.  So I thank-you for your continued prayers in this area, as sorting through this will be an important part of the healing process for me.  I also thank-you for your continued prayers for our family.


Filed under Family, This and That

Few Results

We met with Reece’s doctors last week to discuss the results of his autopsy.  While I appreciated reconnecting with both doctors, I must say, I hope I never have to have a meeting to discuss such a subject matter ever again.  It was neither overly emotional nor surprising.  Still, they verbalized things that we knew all along but no one ever really outright stated.  It’s not that the staff wasn’t truthful with us.  But when you are walking that road, you can’t just state certain things in such an emotionally-charged environment.  Additionally, no one really knows for certain what is going on at the time.  It is a very confusing and complex process; Reece’s was more complex than most.  Without going into all the details that the autopsy revealed, I want to mention two things.

First, Reece was 100% donor and one cord did, in fact, win out in his bone marrow.  I guess it doesn’t really matter to me, though.  He isn’t here with us, so to me, I bring it up to tie up the loose ends that we discussed throughout this whole process.  From a blood-exchange standpoint, the transplant worked.  But honestly, it just feels like a cheap consolation prize at this point.  Second, Reece’s primary physician told us that he had the worst case of skin GVHD that she has seen yet in her practice.  Granted, she is one of the younger doctors on staff, but still, it is pretty rare for kids to have GVHD this severe.  It’s much more common for adults going through transplant.  Kids’ bodies are so much more resilient.  So, we’ve been chewing on that conversation over the weekend.  Somewhere in the archives of this blog I mentioned how I believed Reece’s story to be about enduring much as a young child.  I was right.  But that is only part of his story.

Where I struggle today is not having the opportunity to have discussed what happened with Reece himself.  In my mind I envisioned that there would come a day where he and I could actually discuss what happened.  I could explain why we made certain decisions and why, as far as what we understood, he had to go through BMT.  I know he doesn’t need me to have that conversation with him now, because he knows why it happened, why it had to happen the way it did, and how it ultimately will be used by God.  But I need that discussion.  I want to hear in his own words what it was like for him.  I want to apologize for so many things that happened.  I actually thought that I would feel some sense of closure on the medical side of things after we found out the autopsy results.  Without Reece here, it is incomplete.  For all the joy-filled feelings I have for him, it still feels like I am sitting here licking the BMT wounds.  Truthfully, I’m not sure how to bring that to resolution.  It makes no sense to constantly remind myself of what happened.  However, I could see that part never going away during my lifetime here.  Because even though Reece doesn’t need that conversation with me, I need it with him.  There is no such thing as talking yourself into feeling better about this type of situation.  As I’ve stated so many times before, it is what it is.

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Filed under Bone Marrow Transplant